It has been far too long since my last post. Life has brought on many changes, blessings and challenges in the last 2 years. Today, I'm going to focus on just one of many things I haven't talked about, haven't posted about, and have kept private. March is MS Awareness month. For those of you who do not know what Multiple Sclerosis is, MS is an autoimmune disease where the person's immune system attacks the myelin coating protecting their nerves causing a variety of symptoms, most commonly fatigue, nerve pain, cognitive issues, spasms, and paralysis. I urge you to learn more about this disease and it's often times "invisible" symptoms.
I grew up being raised by a strong, independent mom who happens to have MS. She never let her illness define her and has continued to be one of the most stubborn and determined women I have ever met. Growing up around her support group, doctors and the highs and lows that came with this autoimmune disease made me so much more aware of other people's health, needs and struggles. I often felt different than my friends and like they did not understand how our family operated or why it had to function differently.
When I was 9 years old I remember at one of my mom's neurologist appointments he let me step on to his balance machine after my mom had. I think initially as just something to keep me preoccupied, but there was a moment when he had me close my eyes and I struggled with balance that he mumbled to my mom to "keep an eye on symptoms like that". His words didn't scare me until I was 11 years old and I was getting my vision tested. I needed glasses, after dilating my eyes the optometrist stepped in to the door way and under a quiet voice told my mom that my optic nerves were narrow and showed signs consistent with MS patients.
I did an essay on MS for health class and found comfort in the fact that this disease in which my mom was battling with had no conclusive evidence to be genetic.
In 2010 while pregnant with my 2nd child we were in a car accident that fractured my sacrum, caused damage to my stomach and bladder. After I had delivered our healthy baby boy in March of 2011 I was still having numbness in my legs, struggling with depression and chronic back pain. It wasn't until 7 years later I would find out this was the first onset of brain lesions from an MS flare up.
Fast forward to October of 2015, I had been actively treated for chronic asthma for almost a year and my health was deteriorating. My doctor told me I needed to move to the coast or the desert or I would develop COPD. We moved to the coast and got out of a hostile work environment which lead to a time of physical and emotional healing.
In March of 2017 I went to the emergency room for breathing issues and rapid heart rate where after a multitude of tests and prescriptions I was sent home with anxiety medication, an inhaler and antibiotics. Finally in May of 2017 I found a doctor via urgent care who read my whole file, who cared about my health and who had recently had one of her staff members diagnosed with MS. This doctor heard me say my face was numb on the right side and justify that this was "consistent with my asthma symptoms" and she immediately ordered a brain MRI.
The phone call that followed was both a relief and devastation. MS was no longer "my mom's disease", it is mine too. Deep down, Karl and I knew what the outcome would be once the MRI was ordered, and while I struggled to accept the diagnosis Karl many times picked me up and reminded me it could have been so much worse. God used a series of unfortunate events to get us to where we needed to be.
I haven't really publicly discussed my diagnosis or journey, but with March 1st being the first day of MS Awareness month I figure now is the time to stop hiding what is a big part of mine and my family's life.
I consider myself to be very blessed, I grew up with a mom who has shared along her journey and choices-what worked and what hasn't. I feel blessed that while I went 7 years misdiagnosed I have less than 20 lesions on my brain and none on my spinal chord. I feel blessed that a doctor in urgent care in the little itty bitty town of Coos Bay helped me finally get answers and put under the care of an MS specializing neurologist. I feel blessed to have a supportive husband, family and close friends who have put up with me through my self pitty and crazy dietary restrictions because they love me.
While I know I'm not supposed to compare my MS to anyone else's I feel incredibly blessed and encouraged by the drastic improvements in medical technology between 1985 and now. I have had great success on Tecifidera stabilizing my progression and a handful of other prescriptions to help with the existing symptoms.
So I suppose this is where the public service announcement part comes in. If you have medical concerns about yourself or a loved one, don't ignore them. If your doctor isn't taking your health concerns as seriously as you are- get a new doctor. That nagging feeling that something is not right, usually means (small or big) something is amiss and to not be ignored. To all the MS warriors out there, fight on and never be ashamed of your journey or battle. If you have an "invisible disease" don't let it define you, and don't allow the world's lack of understanding to burden you. Find support in family, friends, support groups and church. Every year new revelations and medical discoveries are made, don't lose hope.
Thanks for being on this journey.
Wednesday, February 28, 2018
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